Hospice in Hawai‘i: Myths Vs. Reality

Illustrations: Jeff Sanner

Emma Sousa, 76, was born and raised in Hilo and still lives there. She married Laurence when both were 39. Before retirement she worked in human resources at Hawai‘i County’s Department of Finance, and he was a mechanical engineer for the county Department of Water Supply.

“Larry was such a wonderful person” – tall, handsome, intelligent, hardworking, she says, with “the biggest heart. … I was very, very fortunate to have been with him.”

In 2016, he was diagnosed with Paget’s disease of the scrotum. “It’s a rare and aggressive form of cancer,” but surgery seemed to have removed it all, she says.

However, four years later, Stage 4 cancer was found in his lymph nodes. Chemotherapy was started immediately, but “after a while, the treatments weren’t as effective, and so we were referred to Hawai‘i Care Choices.” The Hilo-based nonprofit offers hospice and palliative care, as well as bereavement services.

Sousa says Hawai‘i Care’s “very supportive management and staff” were at their side from day one, providing the medical equipment and support needed for quality care at home.

“The nurse, the social workers, the pastors, they were all there for us. … And the services included managing the medications, which gets rather complex,” she says.

A nurse taught Sousa how to treat her husband’s wounds so she could tend to him when the nurse wasn’t there. “I want to stress that the focus is on pain management. My husband was under excruciating pain” and Hawai‘i Care Choices helped control that, she says.

For the last two weeks of his life, the Sousas moved into the nonprofit’s residential facility for round-the-clock support. “It was like a family atmosphere, plus the facility was a state-of-the-art facility. I mean, it was like a hotel room with a lānai. Frankly, we felt like a king and queen because they really treated us so wonderfully.”

Emma Sousa, with her late husband, Laurence.

Laurence Sousa died peacefully on May 24, 2022. “It was a Tuesday night, 8 o’clock. They told me, ‘You can stay as long as you want,’ and so I stayed overnight. They didn’t rush me out. I wanted to spend my last night with my husband, and I really appreciate their compassion,” says Sousa.

“Words alone cannot express our appreciation that Larry had such wonderful last days of his life because of Hawai‘i Care Choices. And after Larry passed away, they were still there for me with their bereavement care. Lani [Wegert, a manager at Hawai‘i Care], the pastor, the social worker – they always check on me.”

Sousa says she and her husband both had Medicare and secondary insurance, which covered all costs. “We didn’t have to pay a cent,” she says, but “we donated to Hawai‘i Care Choices because we want Hawai‘i Care Choices to continue to provide care for others.”

And she became a volunteer. “That’s the best thing that we can do to show our appreciation and also have other families be blessed as we were blessed.”

Hospice Changed Health Care

Until the mid-20th century, Western medicine often pushed for aggressive interventions until the very end of life, an approach that frequently came at the expense of terminally ill patients’ comfort and emotional well-being.

Dame Cicely Saunders, a British nurse, social worker and physician, is widely credited with transforming the way we care for dying people. Having worked with terminally ill patients since 1948, Saunders concluded that much of their suffering was avoidable. She believed compassionate, specialized care was needed to address not just the physical, but also the practical, emotional and spiritual needs of those nearing the end of life.

In a 1963 lecture at Yale University, she introduced the concept of hospice care, a holistic approach that would lay the groundwork for end-of-life care worldwide.

One of Saunders’ key contributions was her advocacy for better pain management. At the time, it was common to withhold additional painkillers until previous doses had worn off, out of fear of addiction or overdose. Saunders argued that, for terminally ill patients who suffer great pain, the risk of addiction is irrelevant and the risk of overdose could be mitigated.

Saunders also reimagined the environment for patients. She rejected the rigid visiting hours of hospitals, saying that families should be free to spend lots of time with their loved ones. She saw hospice as a place of comfort, compassion and dignity for dying patients and their families, with bereavement services supporting the family after a patient’s death.

In 1978, the St. Francis Healthcare System became Hawai‘i’s first hospice care provider; the next year, Hospice Hawaii, now Navian Hawaii, became the second. There are now 11 licensed hospice care providers in the Islands.

Hawai‘i’s Rapidly Aging Population

Hawai‘i has the nation’s highest average life expectancy, 80.7 years, according to the Hawai‘i State Plan on Aging 2023-2027. Additionally, 24.9% of the population is 60 or older – and that’s projected to rise to 29% by 2040.

For people in that demographic, it is important to talk with loved ones about an advanced care plan – before it’s needed. They can ask questions like, “If you were in the final stages of a terminal illness, being kept alive by a machine, when would it be appropriate to pull the plug?” and, “If you couldn’t speak for yourself in a medical emergency, who would speak for you?”

“The law calls it a health care power of attorney or a health care agent,” Jeannette Koijane, executive director of Kōkua Mau, says of the second question. She describes her nonprofit as a “movement to improve care for those with serious illness and their loved ones.”

Koijane advises people to complete both parts of an advanced directive: “One is appointing that agent, and the second is talking about your wishes for the very end of life.” She says the stigma surrounding death in Western cultures too often discourages people from having these “difficult, but really important conversations” ahead of time. “If we can talk about things early, hopefully we can relieve some of that stress.”

Illustrations: Jeff Sanner

Hospice is A subject that many people put off

Patients with prognoses of six months or less to live qualify for hospice. But according to the National Hospice and Palliative Care Organization, half of hospice stays are for no more than 18 days, and “a full quarter of all beneficiary stays in 2022 were for five days or less.”

Hospice workers say they want to dispel misconceptions that prevent patients and their loved ones from reaping the full benefits of hospice care. Here, they address five myths.

Myth #1: Hospice hastens death

Perhaps the most dangerous and common misconception is that entering hospice accelerates dying because patients stop pursuing curative treatment. But a study published in 2007 in the Journal of Pain and Symptom Management looked at the survival rates of 4,493 patients and found the opposite is true: Patients who received hospice care early lived longer than nonhospice patients. Later studies reinforced that conclusion.

The original study showed patients lived an average of 29 days longer because “their pain and symptoms were managed” better, says Dan Haire, president and CEO of Navian Hawaii.

“And it’s not just living 29 days longer because we’re like pulling them across the finish line. These people are thriving. They’re feeling good. They’re living well, they’re surrounded by their friends. So it’s a great benefit,” Haire says.

Lani Wegert is the engagement marketing manager at Hawai‘i Care Choices, the agency the Sousas used. “If you look at the word disease, it’s ‘dis-ease.’ And what happens is, once we bring them on to hospice care, we’re able to minimize that to a point where they start to feel better, because they’re not all stressed out,” she says.

Hospice care improves the well-being of seriously ill patients and their loved ones in several ways. “We cover all medications that are related to somebody’s terminal prognosis. We cover all their supplies. We cover (and deliver) all of their durable medical equipment: hospital beds, bedside tables, bedside commodes, oxygen tanks,” Haire says.

But how can hospice extend life expectancy when it stops terminally ill patients from pursuing curative treatment? The research conducted and reported by the National Hospice and Palliative Care Organization attributes it to three main things:

1. Avoiding the unintended consequences and negative side effects of aggressive curative treatment.

2. Access to other forms of treatment and care that can be provided at home, which focuses on pain management, taking care of practical matters, and nurturing emotional and spiritual well-being.

3. Boosting morale, decreasing stress and increasing patients’ motivation to live because their physical and emotional needs are being attended to.

In addition to providing medical equipment and medications at home, there are several more specific ways hospice may improve quality of life.

Many hospices also have volunteers, but recruiting them can be challenging. Faye Mitchell, executive director of North Hawaii Hospice on Hawai‘i Island, says pairing volunteers with patients “is a lot like matchmaking.” The hospices take into consideration the personalities of both patients and volunteers – their interests, spirituality and “which town they’re from, because you know how that matters sometimes in Hawai‘i.”

Volunteers can be meaningful presences, providing companionship and emotional support, especially when loved ones need to step out. “They can be in the home while a wife goes to the grocery store for an hour and a half,” says Haire, and can minimize the guilt caregivers often feel when they take a break.

All hospices are required to offer bereavement services. “We have a formal bereavement program so that for 13 months after a patient passes, we follow and take care of that family,” says Haire. His Navian Hawaii nonprofit also provides bereavement support before a patient’s death.

Hospice care providers may also offer various adjunct therapies. “So that’s art therapy, equine therapy, pet therapy, music therapy, massage therapy, aroma therapy, all that stuff,” says Haire. These can be cathartic for both patients and their loved ones, he says. An art therapist, for example, can help a child with a terminally ill sibling or parent by giving them a creative channel for their emotions.

Hospice vs. Palliative Care?

All hospice care is palliative care, but not all palliative care is hospice care. Palliative care is for those suffering from conditions that are serious, chronic or life-limiting, but aren’t necessarily terminal. “The top diagnoses for palliative care are normally cancer, congestive heart failure, COPD and kidney, lung or liver disease,” says Wegert.

Palliative care patients can receive comfort care in their homes while pursuing curative treatments, such as chemotherapy, radiation, surgery and dialysis. “They’re still trying to get better in palliative care versus hospice, [where] they’re just trying to feel better,” Haire explains.

Research has shown that early use of palliative care in conjunction with curative treatment can improve a patient’s quality of life, reduce the cost of care and increase a patient’s chances of surviving a serious illness.

A cancer patient, for example, may use palliative care to help them deal with the negative side effects of chemotherapy. That care could be in the form of a nurse who comes to the patient’s home to administer pain medication or a respite volunteer who swings by to help with cooking and cleaning. Palliative care can also include acupuncture and visits from therapy animals. 

Wegert says patients in palliative care are “already in the pipeline with us. So, if it’s time for them to ramp up to the next level, which is hospice, they’re already familiar with us, so they’re not afraid of us. They know that we’re not the grim reaper.”

In recent years, both Navian Hawaii and Hawai‘i Care Choices changed their names, from Hospice Hawaii and Hospice of Hilo, respectively, to reflect that they offer services outside of hospice – namely, palliative care. It’s important to note that not all hospice providers offer palliative care.

Myth #2: Hospice is a place you leave home for

Koijane says people think of hospice as “a place you go.” In fact, while many hospice patients receive care in hospice facilities, hospitals, nursing homes and assisted living facilities, the majority are cared for at home.

According to Koijane, in Hawai‘i 87% of people who die at home are hospice patients. In addition to home being familiar and comforting, it’s usually the most convenient place for family and friends to convene and spend time with their loved ones, which can be a huge morale boost for everyone involved.

Every patient in hospice and palliative care is assigned an interdisciplinary team, which includes a physician, nurse, social worker and chaplain.

“All hospices have to have certain positions filled that take care of a person so that you’re handling the physical, psychosocial, psychological, emotional, spiritual. You have to cover all the bases,” says Mitchell.

As death nears, people often ponder the meaning of life, reflect on how they spent their time on Earth and what the afterlife entails. It’s also a time of introspection for friends and family as they process grief, a difficult emotion.

“A lot of times, people are contemplating their faith, their spirituality at the end, so it is something that is talked about and nurtured, whether it’s bringing in someone from the community, or it’s one of us who is coming in regularly,” says Mitchell.

Chaplains offer spiritual and bereavement support for people of all denominations and  beliefs. “They are not there to push religion, they’re there to provide support if you wish to have it,” explains Amy Goyer, AARP’s national family and caregiving expert.

After her father passed in hospice, a chaplain “was the first person that got there, and he was wonderful. Because, you know, my sisters and I were just devastated, and it was just support … someone there to help hold us together and help us through it.”

The chaplain and social worker are supposed to check in regularly with patients and their loved ones. The social worker can also help with practical matters in advance, such as organ donation and transportation of the body after death.

Goyer says her family’s social worker helped arrange her father’s body donation, “because we knew he wanted to do that. She helped a lot with the logistics … when all I wanted to do was cry.”

Indeed, hospice care is not only for the patient, but also for their loved ones. “We do medication delivery, we supply and deliver equipment. It relieves some of that burden of caregiving and a lot of stress,” says Melanie Dwyer, who started at Hospice Maui as a nurse and now serves as its CEO.

Dwyer’s colleague, Community Outreach Coordinator Anna Hill, adds, “One thing people don’t know is what death looks like in a home without hospice. If you’re under the care of a hospice physician, it’s considered an attended death, and a nurse can go out and complete a pronouncement, and it can be very seamless.” This grants families time to process their loved one’s death and to grieve, she says.

In contrast, “If hospice is not involved and it’s not attended by a physician, it is required for the Police Department and a lot of times the Fire Department [to come]. … There is this very limited amount of time because they have to do what they have to do. Instead of having that time and space, you’re talking to police officers, firefighters, the coroner. It’s very sensory overload when it could just be such a different experience.”

Dwyer adds that she’s seen firsthand the stark difference between the Police Department picking up deceased loved ones and zipping them in body bags versus mortuary workers “picking them up in hospice care, [which] is just wrapping them in a sheet,” where their faces can be visible and their families have all the time they need. The former adds an “extra layer of trauma and it’s so devastating to watch.”

But with so many people hesitant to begin hospice care, it happens all the time. “There’s a statistic that 80% of people want to die at home, but only about 20%” do, Mitchell says.

Koijane adds: “People think that you go into hospice and die like two hours later, as opposed to thinking we’re going to manage pain, we’re going to look at anxiety and stress, think about spiritual suffering, [and] help the family have some really important conversations.”

She reflects on her experience caring for her mother, who died in 1999: “Those conversations with my mom, I still remember them 25 years later. Super important conversations that, had we only been focusing on surgery and brain tumors and sitting around in a hospital, we wouldn’t have had the space for.”

According to the National Hospice and Palliative Care Organization, in 2022, 10% of hospice patients were in hospice for 48 hours or less and 75% for 87 days or less.

“It’s just the way we look at hospice as a country; we see it as a last resort,” Mitchell says of the relatively short hospice stays. “That is unfortunate, because people are missing out on a huge amount of benefits.”

Myth #3: Hospice is Expensive

Hospice has been covered by Medicare since 1982. Those benefits are also usually completely covered by Medicaid and secondary health insurance providers like Kaiser Permanente and HMSA. In cases where someone does not have insurance and needs financial assistance, many hospice care providers have donation funds to pull from. Both hospices and individual patients can also apply for and receive grants to reduce care costs or cover them entirely. 

To qualify for hospice care, patients must have a prognosis six months or less to live. “I calculated that if they were to use those six months, they would essentially be getting about $57,000 worth of benefits,” says Mitchell. The median stay of “18 days is nothing comparatively, so they’re missing out on nearly $60,000 in benefits.”

Patients who outlive their six-month prognoses can continue to receive care at no additional cost for as long as necessary. “Six months is only the entry point, but we’ve had patients on for almost two years. Essentially, if you are still declining and just taking care of comfort measures, you still qualify for hospice.” And for as long as you qualify, your insurance will continue to cover care.

Medicare also generally covers most palliative care costs in Hawai‘i. And in 2024, Hawai‘i became the first state to approve a Medicaid plan for beneficiaries that fully covers costs of palliative care in nonhospital settings.

Myth #4: Once you enter hospice, you can’t pursue any curative treatments 

This is half true: If you’re enrolled in hospice care, you’re no longer pursuing curative treatment for the specific condition that qualifies you for hospice. However, you can still seek curative treatment for other conditions you might have.

Goyer’s father, for example, had Alzheimer’s, which could have made him eligible for hospice care. But she says she had reservations because hospice rules would prevent him from taking his Alzheimer’s medication.

“To me, everyone knows that’s not a cure for all Alzheimer’s. Why would he have to go off of it? It’s a comfort treatment really. It’s to make him be able to get up out of the chair at that point in the disease or possibly communicate a little more. So I didn’t want to take him off that,” says Goyer.

“But he also had congestive heart failure, so they were able to admit him to hospice” with that diagnosis, she says. He stopped pursuing treatment for his congestive heart failure, but “he was able to stay on his medication for the Alzheimer’s until he died.”

Also keep in mind that you can opt out of hospice care if you decide to pursue curative treatment. “I think people have this misconception that once they enter hospice, they can’t leave; but you can leave anytime and then come back whenever,” Mitchell says. “People can actually just try it out. It sounds funny, but we have people do that. … So it’s a great option, and you’re in charge of it.”

For some patients, hospice provides a much-needed break from aggressive curative treatments, such as high-dose chemotherapy and invasive surgeries, allowing them to focus instead on their comfort and well-being. When they’re feeling ready and strong enough, they can leave hospice and resume curative treatments alongside palliative care.

Some patients’ health improves so significantly after shifting from curative treatment to pain management and comfort care, they no longer need to be in hospice, Mitchell says. “About 18% of our patients (at North Hawaii Hospice) ‘graduate,’ meaning that they get so well that they can’t qualify for hospice anymore.”

At Maui Hospice, 20% of hospice patients “graduate,” Dwyer says. “So I really sometimes struggle with that prognosis piece” of six months or less to qualify for hospice, because “that is a real deterrent for people. When people say yes to hospice care, it feels like saying, ‘Yes, I am going to die in six months.’ But that’s not always the case.”

One example is Jimmy Carter. The former president was open about his decision to enter hospice in February 2023. It was almost two years before he died in December 2024 at age 100, making him the longest-lived U.S. president ever.

Myth #5: All hospice care providers are the same

Wegert says several hospices in the state offer palliative care, “which is pre-hospice for sure, then hospice care, and then all of us are mandated to provide bereavement care as well. But I’d have to say that we’re not all the same.”

Because care providers vary in size, specialties, services offered and overall quality of care, she suggests that people do their due diligence before deciding which hospice is right for them or their loved ones.

On O‘ahu, the hospice care providers are Bristol Hospice Hawaii, Islands Hospice, Malama Ola Health Services, the St. Francis Healthcare System and Navian Hawaii. Of those, Navian is the only one that offers hospice care for children. And while St. Francis is the only Catholic-based hospice in Hawaii, it supports spiritual care for patients of all faiths. 

Hospice care providers must meet specific requirements set by Medicare, state licensing regulations, and/or accreditation standards. While some stop at the minimum requirements, other providers go beyond.

For example, Dwyer says, “There are certain things that are required by Medicare that are very simple regarding grief and bereavement, but you can really kind of hone in on the differences between programs and what they offer.”

She says it’s important to ask questions to clarify what specific services are offered and which ones aren’t, such as, “Do you do in-person groups and virtual groups? Do you do events and things to help people during the holidays? Because that first year is really hard going into the holidays after you’ve had a loved one die.”

Hospices especially differ in the kinds of adjunct therapies offered. Some hospices may only fulfill the required roles of the interdisciplinary team, leaving volunteers to do basic respite. Others offer extra services.

Dwyer says Maui Hospice is “kind of unique” in that it not only covers acupressure, reiki and massage therapy, but also a variety of treatment modalities for each of those therapies. “We offer to both the patient and the primary caregiver, and so they can have up to eight sessions that are complimentary, where we send the providers out to their homes.”

For-profit Hospice vs. Nonprofits

An important distinction among hospice care providers is whether they operate as for-profit or nonprofit organizations. When the modern hospice care movement began in the 1960s, and on into the 1970s, it was mostly nonprofits and volunteer driven. That started to change when Medicare began paying for hospice care in 1984, which incentivized for-profit businesses.

Hospice in America has since become a growth industry dominated by for-profit enterprises, many of which are regional and national chains. Today, three-quarters of the nation’s more than 5,300 hospice care providers are for-profit. 

A 2023 study published in the Journal of the American Medical Association Internal Medicine included a survey of more than 650,000 caregivers whose loved ones were receiving hospice care from 3,107 hospices.

Although the study found variation in quality of care given by both for-profit and not-for-profit hospices, the authors’ preliminary research indicated that, on average, for-profits performed significantly worse in several areas: “Prior research found that, in contrast to not-for-profit hospices, for-profit hospices focus on delivering care to patients in nursing homes, provide fewer nursing visits, and use less skilled staff.”

This survey asked respondents to score eight measures of hospice care performances, including “communication, timely care, symptom management, and emotional and religious support, as well as a summary score averaging across measures. Linear regression examined the association between profit status and hospice-level scores, adjusting for other organizational and structural hospice characteristics.”

The study concluded that “family caregivers reported worse care experiences at for-profit hospices compared with not-for-profit hospices.”

A study published in 2024 in the American Journal of Hospice and Palliative Medicine, which specifically focused on the 50 largest hospices in the U.S., reported similar findings: “Caregivers and employees had better experiences with nonprofits than for-profits. Anger and frustration were expressed toward large, for-profit providers more focused on admissions, profiteering, and paying dividends than actual care.”

Some people I interviewed who worked for local nonprofit hospices had qualms with the for-profit model. “Sadly, there is quite a lot of corruption in hospices – not here that I know of, but on the mainland it’s like, really, really rampant,” Wegert says.

Mitchell of North Hawaii Hospice says: “If you think about it, it makes sense because they have certain financial goals that are front and center. If your focus is profit, that’s going to happen, whereas I’m so glad I’m part of a nonprofit.”

The largest hospice care provider in the state, Bristol Hospice Hawaii, is a for-profit organization and part of a national chain headquartered in Utah. Bought by private equity backer Webster Equity Partners in 2017 for $70 million, it offers care in 15 states.

Dani Moreno, a former volunteer coordinator at Bristol Hospice Hawaii, says the company had “a little over 600 patients” when she started working for Bristol in February 2024. When she resigned eight months later, she estimates the company had around 830 patients. 

“That’s a ridiculous amount of growth. I can’t imagine [they’re] caring for people well when [they’re] spread so thin. Absolutely, it’s sacrificing quality of care,” says Moreno. “I’m not saying individually people are bad. I’m saying the system that we’re in makes it really hard for us to take care of people.”

Two people who previously worked at Bristol and are not named in this story estimate that Bristol now has about triple the number of patients in Hawai‘i compared to the Islands’ second-largest hospice group. Moreno says her former employer should stop adding to its numbers because “the rapid rate of growth has not been sustainable.” I contacted Bristol Hospice Hawaii about this article, and its senior executive director and regional VP agreed to a Zoom interview for the following week. But 15 minutes into that interview, the Bristol representatives ended the call.

Once I let them know I was going to ask about the differences between for-profit and nonprofit hospices, they said they had to jump off the call because they were being paged by a surveyor. Minutes later, I received an email from them that stated: “Please just leave Bristol out of the article as I won’t have time (to talk) today due to the current survey going on.” 

Hawaii Business Magazine felt the perspective of the state’s largest hospice provider was important to this story, and that readers should understand Bristol chose not to participate.

Mitchell of North Hawaii Hospice says all three of the nonprofit hospices on Hawai‘i Island work together and their dynamic is much different than that at for-profits: “I’m friends with the executive director of Kona Hospice and the executive director of Hawai‘i Care Choices, and we share so much with each other to help each other out. We’re not in competition. In fact, we’ve got each other’s backs.”

Unlike for-profits, nonprofits are required to make certain information public, including their yearly revenue, funding, assets, expenses, executive compensation, salaries and other wages. You can find that information on online databases such as ProPublica and Cause IQ.

“I don’t think I could work for a for-profit hospice, because I feel like all of it is not coming back into the organization to help the community. That’s really sad to me, because all the money that we make, we have to put it back into the company to provide the best care possible. That’s the focus versus, ‘We gotta make sure that whatever shareholders are making money.’ So there’s a philosophy divide for sure,” says Wegert.

Nonprofit hospice providers currently outnumber for-profit providers in Hawai‘i, 8 to 3. Based on my research, all of them operate exclusively in Hawai‘i except for Bristol.